“We Treat Everyone Equally”: Hospice Care Team Members’ Language Use Regarding Sexual and Gender Minority Patients and Caregivers

Abstract

Purpose The way Hospice Care Team (HCT) members talk about patients and caregivers reflects personal attitudes and experiences, training, and broader social and cultural discourse. This secondary analysis examined the framing language professional hospice care providers used when discussing end-of-life care for LGBTQ+ patients and caregivers. Methods Discourse analysis and frame theory informed a secondary, qualitative analysis of focus group data collected with hospice providers (N = 48) in 3 U.S. states regarding their knowledge, experience, and opinions about end-of-life care for LGBTQ+ patients and caregivers. Results The following four (often overlapping) frames were identified (1) A normalizing frame which dismissed differences between LGBTQ+ patients/caregivers and non-LGBTQ+ individuals in general, and especially at end-of-life (2) A homogenizing frame which cast being LGBTQ+ as an intrinsic, universal characteristic and did not differentiate between different groups, specifically conflating orientation and gender identity (3) A pathologizing frame in which providers related being LGBTQ+ to disease conditions or illegal behaviors (4) An individualizing frame which focused on between-group differences, acknowledged variation, and emphasized the importance of historical context for personalized care. Conclusion Examination of discursive frames used by providers enhances understanding of how social and cultural influences, along with training and experience, shape how HCT members approach working with LGBTQ+ patients and families, and illuminates areas where additional education and training are needed. Our findings support the need for ongoing efforts to improve HCT members’ knowledge and skill regarding the needs of LGBTQ+ patients and families within the context of hospice and end-of-life care.

The Burden of having to Wonder: Hospice Caregiving Experiences of LGBTQ+ Cancer Family Caregivers

“…34 Despite this, hospice providers may believe that patients’ or caregivers’ LGBTQ + identity is irrelevant to EOL care, or that providers treat all patients and caregivers the same. 21,38 How minority stress may impact the experience of EOL care remains under-examined, and accounts of LGBTQ + caregivers and patients are underrepresented in the literature. 10…”

“…34 Despite this, hospice providers may believe that patients' or caregivers' LGBTQ + identity is irrelevant to EOL care, or that providers treat all patients and caregivers the same. 21,38 How minority stress may impact the experience of EOL care remains underexamined, and accounts of LGBTQ + caregivers and patients are underrepresented in the literature. 10 Moreover, the complexity of delivering EOL care within patients' and caregivers' homes and personal spaces-and the many new intimacies and intrusions associated with EOL caregiving-may intensify the effects of minority stress.…”

Palliative Care Professionals’ Perceptions of Communication With Sexual and Gender Minority Patients

“…13 In addition, the physical environment is important for person-centered care, as it may send unintentional (or intentional) messages regarding attitudes towards LGBTQ + patients. 14 Although prior studies have examined providers' attitudes and beliefs surrounding LGBTQ + patients and caregivers in the context of hospice, 6,15 few have examined the beliefs of palliative care clinicians working with LGBTQ + patients and caregivers in the context of serious illness. 9 Moreover, few studies have accessed the ways in which structural factors such as SOGI data collection and the clinical environment may affect health care delivery to these populations.…”

“…This approach can result in inadvertently ignoring important differences in medical history, experiences, availability of social support, and treatment preferences. 6 Such gaps in knowledge of SGM palliative care provision are evident in a study which found that only four out of 24 palliative care trained social service, health, and faith-based providers demonstrated high competency for meeting SGM older adults’ health and social needs. 7 This lack of competence in caring for SGM individuals contributes to health care inequities for this marginalized group.…”